The Experience of the Family Caregivers’ Role: A Qualitative Study

2003 ◽  
Vol 17 (2) ◽  
pp. 137-151 ◽  
Author(s):  
Paula Lane ◽  
Hugh McKenna ◽  
Assumpta Ryan ◽  
Paul Fleming
Keyword(s):  
Family Caregivers ◽  
Information Needs ◽  
Social Care ◽  
Qualitative Interviews ◽  
Family Care ◽  
Service Planning ◽  
Complex Nature ◽  
Care Needs ◽  
Health And Social Care ◽  
The Impact

In Ireland, there is a dearth of research exploring the perceived health and social care needs and experiences of family caregivers of older people. In response, this research study was conducted to explore the profile, role and needs of family caregivers as a means of understanding their experience of caring. The study also set out to identify coping strategies employed by caregivers and explore positive aspects of the caring relationship in relation to quality of life, information needs, day care and respite care, transport and emotional support. A multimethod approach used interviews, focus groups and postal questionnaires. In the main study a pretested questionnaire, comprising closed and open questions was used with a stratified, systematically randomized sample of caregivers in urban and rural home care settings, of which 52% of respondents to the questionnaire volunteered to partake in in-depth interviews. This article per deals predominantly with the findings arising from 10 in-depth qualitative interviews. The data yielded a rich and meaningful picture of the caregiving experience, profiling the complex nature of this diverse and multifaceted role. Findings showed that three main categories emanated from the data: the caring role-context and attitudes, the impact of caring and the need to support the carers’ role. The need to develop continually an understanding of the effectiveness of specific health and social care interventions was also of paramount importance. The anticipated continuing demand for family care means that caregivers’ needs and perspectives need to be integrated into future service planning and decision-making processes, in partnership with statutory and voluntary bodies. While this was the first study of its type in Ireland, the issues raised reflect the findings of other published studies and have important lessons for family carers and health care practitioners generally.

scholarly journals Health and social care services for older male adults in prison: the identification of current service provision and piloting of an assessment and care planning model

2013 ◽  
Vol 1 (5) ◽  
pp. 1-138 ◽  
Author(s):  
J Senior ◽  
K Forsyth ◽  
E Walsh ◽  
K O'Hara ◽  
C Stevenson ◽  
...  
Keyword(s):  
Social Care ◽  
Qualitative Interviews ◽  
Research Programme ◽  
Older Men ◽  
Care Needs ◽  
Care Services ◽  
Older Prisoners ◽  
Care Assessment ◽  
Health And Social Care ◽  
The Impact

AbstractBackgroundOlder prisoners are the fastest growing subgroup in the English and Welsh prison estate. Existing research highlights that older prisoners have high health and social care needs and that, currently, these needs routinely remain unmet.Objectives(1) To explore the needs of men entering and leaving prison; (2) to describe current provision of services, including integration between health and social care services; and (3) to develop and pilot an intervention for identifying health and social care needs on reception into prison, ensuring that these are systematically addressed during custody.MethodsThe research programme was a mixed-methods study comprising four parts: (1) a study of all prisons in England and Wales housing older adult men, establishing current availability and degree of integration between health and social care services through a national survey and qualitative interviews; (2) establishing the health and social care needs of older men entering prison, including experiences of reception into custody, through structured (n = 100) and semistructured (n = 27) interviews; (3) the development and implementation of an intervention to identify and manage the health, social care and custodial needs of older men entering prison; and (4) exploration of the health and social care needs of older men released from prison into the community through qualitative interviews with older prisoners prior to and following discharge from prison. Descriptive statistics were produced for all quantitative data, and qualitative data were analysed using the constant comparison method.ResultsThe number of older prisoner leads has increased in recent years but they do not all appear always to be active in their roles, nor in receipt of specialist training. Nearly half (44%) of establishments do not have an older prisoner policy. There is a lack of integration between health and social care services because of ambiguity regarding responsibility for older prisoners' social care. The responsible social service may be located a considerable distance from where the prisoner is held; in such instances, local social services do not co-ordinate their care. The most frequent unmet need on prison entry was the provision of information about care and treatment. Release planning for older prisoners was frequently non-existent.LimitationsThe study used a cut-off age of 60 years as the lower limit for the definition of an older prisoner; evidence has emerged that supports a redefinition of that cut-off to 50 years. Our study examined the care provided for men and this should be considered if contemplating using the Older prisoner Health and Social Care Assessment and Plan (OHSCAP) with older women in prison.ConclusionThe OHSCAP, developed as part of this study, provided a feasible and acceptable means of identifying and systematically addressing older prisoners' health and social care needs. Future work will include the conduct of a randomised controlled trial to examine the impact of the OHSCAP in terms of improving a range of outcomes, including economic impact.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

scholarly journals Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a protocol for a scoping review

BMJ Open ◽  
2017 ◽  
Vol 7 (12) ◽  
pp. e018247 ◽  
Author(s):  
Elana Commisso ◽  
Katherine S McGilton ◽  
Ana Patricia Ayala ◽  
Melissa, K Andrew ◽  
Howard Bergman ◽  
...  
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Scoping Review ◽  
Chronic Conditions ◽  
Social Care ◽  
Grey Literature ◽  
Well Being ◽  
Multiple Chronic Conditions ◽  
Care Needs ◽  
Health And Social Care

IntroductionPeople are living longer; however, they are not necessarily experiencing good health and well-being as they age. Many older adults live with multiple chronic conditions (MCC), and complex health issues, which adversely affect their day-to-day functioning and overall quality of life. As a result, they frequently rely on the support of friend and/or family caregivers. Caregivers of older adults with MCC often face challenges to their own well-being and also require support. Currently, not enough is known about the health and social care needs of older adults with MCC and the needs of their caregivers or how best to identify and meet these needs. This study will examine and synthesise the literature on the needs of older adults with MCC and those of their caregivers, and identify gaps in evidence and directions for further research.Methods and analysisWe will conduct a scoping review of the peer-reviewed and grey literature using the updated Arksey and O’Malley framework. The literature will be identified using a multidatabase and grey literature search strategy developed by a health sciences librarian. Papers, reports and other materials addressing the health and social care needs of older adults and their friend/family caregivers will be included. Search results will be screened, independently, by two reviewers, and data will be abstracted from included literature and charted in duplicate.Ethics and disseminationThis scoping review does not require ethics approval. We anticipate that study findings will inform novel strategies for identifying and ascertaining the health and social care needs of older adults living with MCC and those of their caregivers. Working with knowledge-user members of our team, we will prepare materials and presentations to disseminate findings to relevant stakeholder and end-user groups at local, national and international levels. We will also publish our findings in a peer-reviewed journal.

‘They just throw you out’: release planning for older prisoners

2014 ◽  
Vol 35 (9) ◽  
pp. 2011-2025 ◽  
Author(s):  
KATRINA FORSYTH ◽  
JANE SENIOR ◽  
CAROLINE STEVENSON ◽  
KATE O'HARA ◽  
ADRIAN HAYES ◽  
...  
Keyword(s):  
Social Care ◽  
Qualitative Interviews ◽  
Comparison Method ◽  
Physical And Mental Health ◽  
Care Needs ◽  
Release Planning ◽  
The North ◽  
Older Prisoners ◽  
Health And Social Care ◽  
Formal Communication

ABSTRACTOlder prisoners are the fastest growing incarcerated sub-group. They have more complex health and social care needs than both younger prisoners and their age-matched peers living in the community. Prisoners who have been recently released are at enhanced risk in terms of their physical and mental health. Consequently, there is a need for timely, multi-disciplinary release planning. The aim of this study was to explore the health and social care needs of older male adults discharged from prison into the community. Qualitative interviews were carried out with prisoners with four weeks left to serve (N=62), with follow-up interviews conducted four weeks after release (N=45). Participants were selected from nine prisons in the North of England. The constant comparison method was used to analyse the data. Older prisoners perceived release planning to be non-existent. There was a reported lack of formal communication and continuity of care, causing high levels of anxiety. Older prisoners experienced high levels of anxiety about the prospect of living in probation-approved premises; however, those who did go on to live in probation-approved premises had their immediate health and social care needs better met than those who did not move into such accommodation. Release planning for older prisoners is generally inadequate and there is currently a missed opportunity to address the needs of this vulnerable group.

scholarly journals Best practice for providing social care and support to people living with concurrent sight loss and dementia: professional perspectives

2016 ◽  
Vol 20 (2) ◽  
pp. 86-93 ◽  
Author(s):  
Simon Chester Evans ◽  
Jennifer Bray
Keyword(s):  
Information Needs ◽  
Social Care ◽  
Well Being ◽  
Small Sample ◽  
Content Type ◽  
Care And Support ◽  
Geographical Regions ◽  
Health And Social Care ◽  
Sight Loss ◽  
The Impact

Purpose – Approximately 100,000 people in the UK aged 75 and over have concurrent dementia and sight loss, but current understanding of their experiences, needs and preferences is limited. The purpose of this paper is to report on a research project that explored the provision of social care and support for older people with both conditions. Design/methodology/approach – The project was a collaboration between the universities of York, Worcester, Bournemouth and Cambridge, supported by the Thomas Pocklington Trust and the Housing and Dementia Research Consortium. Data for this paper were drawn from focus groups held in 2013 involving 47 professionals across the dementia, sight loss and housing sectors. Findings – Thematic analysis identified five main barriers to providing high-quality, cost-effective social care and support: time constraints; financial limitations; insufficient professional knowledge; a lack of joint working; and inconsistency of services. The requirements of dementia and sight loss often conflict, which can limit the usefulness of equipment, aids and adaptations. Support and information needs to address individual needs and preferences. Research limitations/implications – Unless professionals consider dementia and sight loss together, they are unlikely to think about the impact of both conditions and the potential of their own services to provide effective support for individuals and their informal carers. Failing to consider both conditions together can also limit the availability and accessibility of social care and support services. This paper is based on input from a small sample of self-selecting professionals across three geographical regions of England. More research is needed in this area. Practical implications – There are growing numbers of people living with concurrent dementia and sight loss, many of whom wish to remain living in their own homes. There is limited awareness of the experiences and needs of this group and limited provision of appropriate services aids/adaptations. A range of measures should be implemented in order to support independence and well-being for people living with both conditions and their family carers. These include increased awareness, improved assessment, more training and greater joint working. Social implications – People living with dementia or sight loss are at high risk of social isolation, increasingly so for those with both conditions. Services that take an inclusive approach to both conditions can provide crucial opportunities for social interaction. Extra care housing has the potential to provide a supportive, community-based environment that can help residents to maintain social contact. Originality/value – This paper adds much-needed evidence to the limited existing literature, and reflects the views of diverse professionals across housing, health and social care.

scholarly journals The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience (PAROLE-onco): a longitudinal multiple case study protocol

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
M. P. Pomey ◽  
M. de Guise ◽  
M. Desforges ◽  
K. Bouchard ◽  
C. Vialaron ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Clinical Oncology ◽  
Patient Experience ◽  
Emotional Support ◽  
Social Care ◽  
Legal Issues ◽  
Care Services ◽  
Health And Social Care ◽  
Ethical And Legal Issues ◽  
The Impact

Abstract Background Quebec is one of the Canadian provinces with the highest rates of cancer incidence and prevalence. A study by the Rossy Cancer Network (RCN) of McGill university assessed six aspects of the patient experience among cancer patients and found that emotional support is the aspect most lacking. To improve this support, trained patient advisors (PAs) can be included as full-fledged members of the healthcare team, given that PA can rely on their knowledge with experiencing the disease and from using health and social care services to accompany cancer patients, they could help to round out the health and social care services offer in oncology. However, the feasibility of integrating PAs in clinical oncology teams has not been studied. In this multisite study, we will explore how to integrate PAs in clinical oncology teams and, under what conditions this can be successfully done. We aim to better understand effects of this PA intervention on patients, on the PAs themselves, the health and social care team, the administrators, and on the organization of services and to identify associated ethical and legal issues. Methods/design We will conduct six mixed methods longitudinal case studies. Qualitative data will be used to study the integration of the PAs into clinical oncology teams and to identify the factors that are facilitators and inhibitors of the process, the associated ethical and legal issues, and the challenges that the PAs experience. Quantitative data will be used to assess effects on patients, PAs and team members, if any, of the PA intervention. The results will be used to support oncology programs in the integration of PAs into their healthcare teams and to design a future randomized pragmatic trial to evaluate the impact of PAs as full-fledged members of clinical oncology teams on cancer patients’ experience of emotional support throughout their care trajectory. Discussion This study will be the first to integrate PAs as full-fledged members of the clinical oncology team and to assess possible clinical and organizational level effects. Given the unique role of PAs, this study will complement the body of research on peer support and patient navigation. An additional innovative aspect of this study will be consideration of the ethical and legal issues at stake and how to address them in the health care organizations.

scholarly journals Impact of dementia education and training on health and social care staff knowledge, attitudes and confidence: a cross-sectional study

BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e039939
Author(s):  
Sahdia Parveen ◽  
Sarah Jane Smith ◽  
Cara Sass ◽  
Jan R Oyebode ◽  
Andrea Capstick ◽  
...  
Keyword(s):  
Online Survey ◽  
Social Care ◽  
Education And Training ◽  
Care Staff ◽  
Cross Sectional ◽  
Health And Social Care ◽  
Training Content ◽  
The Impact ◽  
And Training ◽  
Dementia Education

ObjectivesThe aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training.DesignCross-sectional survey study. Data collection occurred in 2017.SettingsHealth and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes.ParticipantsAll health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%).OutcomesKnowledge, attitude and confidence of health and social care staff.ResultsHierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01).ConclusionThe results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence.

scholarly journals The value of psychiatrists in leadership and management

2016 ◽  
Vol 22 (4) ◽  
pp. 263-268 ◽  
Author(s):  
Jennifer Perry ◽  
Fiona L. Mason
Keyword(s):  
Social Care ◽  
Self Awareness ◽  
Management Styles ◽  
Leadership And Management ◽  
Health And Social Care ◽  
The Uk ◽  
Medical Leadership ◽  
The Impact ◽  
Organisational Level

SummaryThe health and social care landscape in the UK is changing, and there is now, more than ever, a real need for doctors to embrace leadership and management. Evidence shows that medical leadership is associated with better outcomes for patients. Psychiatrists are particularly well suited to such roles, given the interpersonal skills and self-awareness that they develop in their training. In this article, we examine the role of the psychiatrist in leading at a patient, team and organisational level and the impact this has. We also discuss different leadership and management styles.

scholarly journals The burden of triumph: meeting health and social care needs

The Lancet ◽  
2017 ◽  
Vol 390 (10103) ◽  
pp. 1630-1631 ◽  
Author(s):  
Andrew Dilnot
Keyword(s):  
Social Care ◽  
Care Needs ◽  
Health And Social Care

Is co-production working well in recovery colleges? Emergent themes from a systematic narrative review

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Karen Louise Bester ◽  
Anne McGlade ◽  
Eithne Darragh
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Social Care ◽  
The Body ◽  
Bibliographic Databases ◽  
Service Users ◽  
Content Type ◽  
Practitioner Attitudes ◽  
Health And Social Care ◽  
The Impact

Purpose “Co-production” is a process in health and social care wherein service users and practitioners work in partnership. Recovery colleges (RCs) are educational establishments offering mental health education; a cornerstone feature is that courses are designed and delivered in parity by both mental health practitioners and “peers” – people with lived experience of mental illness. This paper aims to consider, through the identification of key themes, whether co-production within RCs is operating successfully. Design/methodology/approach The paper is a systematic review of qualitative literature. Relevant concept groups were systematically searched using three bibliographic databases: Medline, Social Care Online and Scopus. Articles were quality appraised and then synthesised through inductive thematic analysis and emergent trends identified. Findings Synthesis identified three key themes relating to the impact of co-production in RCs: practitioner attitudes, power dynamics between practitioners and service users, and RCs’ relationships with their host organisations. As a result of RC engagement, traditional practitioner/patient hierarchies were found to be eroding. Practitioners felt they were more person-centred. RCs can model good co-productive practices to their host organisations. The review concluded, with some caveats, that RC co-production was of high fidelity. Originality/value RC research is growing, but the body of evidence remains relatively small. Most of what exists examine the impact of RCs on individuals’ overall recovery and mental health; there is a limited empirical investigation into whether their flagship feature of parity between peers and practitioners is genuine.

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